ADVICE PLEASE

[PMRGCA19]

I have both PMR and sero negative inflammatory Arthritis as well as OsteoArthritis in knee. At the beginning of May Hydroxycloroquine was cut from 400 g to 200 g and in early June I decreased Pred to 7.5/7/6.5 on a 3-day cycle. Since then I have had pain in my hips, thighs, calves and knee especially after walking 30 mins and I am much more tired than before. Previously I could walk for 45 mins with no after effects.

Today I’m on 7.5 Pred and am thinking of reverting to 7.5/7 mg cycle though I am reluctant to do so! Any suggestions would be welcomed.

[DorsetLady PMRGCAuk volunteer]

Hi,

To be honest there’s no point in being on a dose that’s not controlling the symptoms. If it were me I’d stay on 7.5mg for a few more days and see if you are better. If not, then you might need a very quick blast at 10mg for a few days (then back down to 7.5mg - no lower as that’s obviously not enough) .

If 7,5mg works stay on it for at least a couple of weeks before you consider any reduction. ....and then to 7mg. Would suggest from now on you reduce 0,5mg a time - and preferably on a monthly basis - no quicker.

You are in the region of your adrenal needing to wake up again - so the slower you can taper the better for them - and your PMR.

You are only about 18 months into treatment, so there’s no rush to get to zero. You are trying to find the lowest dose that gives you the same relief as initial dose did, so if you need a little extra at the moment, you need a little extra.

[PMRGCA19 in reply to DorsetLady]

Thanks so much for your prompt reply - that's what I thought you would say. I'll heed your advice to go back up.

[DorsetLady PMRGCAuk volunteer in reply to PMRGCA19]

... so predictable it’s boring 🤣😂🤣- but also the right thing to do.

Hope it works.

[PMRpro Ambassador]

Why did you reduce and why did you reduce like that? You need what you need - and it sounds like 7.5mg. You shouldn't be trying to reduce more than 0.5mg at a time and using a longer taper might help though:

healthunlocked.com/pmrgcauk...

is one with the explanation of why. Other versions are available.

[PMRGCA19 in reply to PMRpro]

I reduced because both GP and Rheumatologist told me so. I have reduced by 1 mg per month since 16 mg by alternating higher/lower dose and at 8 mg per month decreased successfully by 0.5 per month again by alternating higher/lower dose until beginning of June. I read on this site that someone had done this. Now I've come unstuck so it's time to try some other way.

Thanks for your helpful advice.

[bakingD]

Hope it helps to go back up as the experts have said Sounds like you’re changing to much too quickly

How did they differentiate between seronegative arthritis and PMR? Am v interested as my current rheumatologist says I have seronegative and 2 other rheumies have said I have PMR!!!

[PMRGCA19 in reply to bakingD]

I developed PMR in Feb 19, diagnosed in March 19 when Pred had a dramatic effect on my aches and pains inside 24 hours (hallelujah!) and developed the arthritis in September 19. They had entirely different symptoms (muscles/joints) and the Rheumatologist's 'doppler' scan showed up so much inflammation in my wrists, hands and feet.

Hope this helps.

[bakingD in reply to PMRGCA19]

Thanks very much

[visionatsea]

I have identical diagnoses. Rhum has prescribed Methotrexate and asked that I begin to taper Prednisone. On Methotrexate for about 7 wks. (10mg 1X/wk) and it isn't completely effective for 3mths. Nonetheless, am at one of the lowest doses of Prednisone (4.5mg/day) in 18mth since PMR diagnosis. Able to walk 6mi, play 18 holes of golf, ride a bike and get to fitness center.

[PMRGCA19 in reply to visionatsea]

You are so fortunate to be able to do so much exercise. I had better not become jealous but rather be thankful that I am as well as I am - there are so many others who would love to be able to walk 30 mins daily! When your Methotrexate kicks in after 3 months there will be no stopping you.